Category Archives: Dementia/fundraising

Life Awareness Week

I feel caught in a perfect storm of life’s difficult-to-deal-with-moments.

Every seven days it seems there’s a new awareness week for something.

This weekend marks the end of Dying Matters Week and Mental Health Awareness Week and begins the start of Dementia Awareness Week – three topics on which I have a current speciality.

Get me on Mastermind this instant and I’d answer every question. That’s how “aware” I am!

Having lost my wonderful mum less than four weeks ago in sudden, unexpected and traumatic circumstances – yes I’m going through the numbness, the “it can’t be true” questioning, the guilt of feeling in some way to blame, responsible, at fault for not doing more to prevent it, mum having died at my home, in my care.

The knowledge that professional help was sought on several occasions and that paramedics were there when mum died, because I called them, does little to stop me going over the course of events and trying to change them.

I feel physically ill, my body is doing strange things – even down to drastic bleeding from my gums a few days later. I go into physical spasms of grief, screaming aloud in my sleep, sobbing in a supermarket car park. This is not about wiping the tears away with a tissue.

I’ve been totally lost for words, unable to string a coherent reply to a question. Bad dreams, nightmares, getting up in the middle of the night, forgetfulness, I can tick those boxes, that’s if I remember and focus hard enough.

And the flashbacks and intrusive thinking, that’s all part of it.

That side of it, I was pretty accomplished at already. For 25 years I’ve suffered from bouts of depression, including at times self-harming because of the mental agony I’ve felt. My recurring anxiety, spiralling, hamster-wheeling doubt was diagnosed as OCD four years ago, with childhood traumas recognised as being part of the root cause, leading to 20 weeks of intensive therapy.

It helped me a lot, in learning how to deal with it, but it never totally goes away, so yes, I’d say I have a pretty solid awareness of mental health issues.

Dementia, is one of my identified trigger points – the scary demon in my basement. It’s something I’ve been terrified of since a child, when my lovely grandmother’s increasingly eccentric behaviour was put down to being “senile” with very few people at that time bothering to try to understand.

Thankfully, dementia awareness has increased massively since those dark days and there’s been a shift in public consciousness, research and care.

I learnt lots more first hand about this cruel disease, when my dad was diagnosed in 2011 at the age of 70 with vascular dementia, dying just over three years later. It was a journey of mixed emotions, challenges, despair, anger, grief, but also laughter, compassion, enlightenment, and love.

This Dementia Awareness Week remains hugely relevant and important to me – my dear husband John having recently been referred by his GP to the local memory clinic. The appointment is in a few weeks’ time, 20 years to the day that we got married. Happy Anniversary Darling!

It will also be a few days after the biggest event of my life, a women only marathon, which I’ve taken a lead role in organising and aim to take part in.

It’s called Women Can.

I love the positive affirmation of that simple straightforward statement.

The medals arrived yesterday, 450 of them glistening in a box. They made me think about all those women out there, going through their own journey of awareness, issues affecting their lives, but still signing up to our event and taking part, because through running, endurance running in particular, pitting yourself against that challenge, you learn that women can, men can, we all can.

It’s about getting through the tough times yourself and helping others through them also.

About being life aware.

Thanks to all the special people who are life aware, who have been, and are continuing, to be there for me.

*Special thanks to Sue, a counsellor with the bereavement charity Cruse, for her recent clarity and insight and her recommendation to visit the website of the charity Sudden Death – awareness definitely helps! For information about mental health issues go to Mind. For information about dementia research go to BRACE.

Pax Tecum

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It’s a strange, confusing, difficult world at times…

…a world of conflict – from our own internal mental struggle to the misery and devastation humanity can wreak upon itself.

…a world of struggle – overcoming obstacles, striving to do your best against the odds

…a world of doubt, fear, judgement and anxiety – those demons that prey on our inner consciousness and can taint our wider view of society at large.

But it’s also a world of good things – of love, joy, laughter, friendship.

A world of positive energy that helps us overcome adversity, in whatever form it takes.

Today is World Alzheimer’s Day, a collective global raising of awareness about dementia and its profound impact on those living with this cruel disease and those who care for them.

It’s also the International Day of Peace.

When my dad was in advanced stages of his vascular dementia and could no longer speak, some words that helped me were the opening lines to Desiderata: Go placidly amid the noise and the haste and remember what peace there may be in silence.”

My grandfather, a devout Catholic, instead of saying goodbye at the end of a visit would often say: “Pax tecum”.

Whatever suffering in this world – from Alzheimer’s to xenophobia – and whatever one’s view of religion, on this International Day of Peace: “Peace be with you”. What better quality to wish for?

 

 

 

Defeating Dementia

fur tor 2016.jpg

Defeat Dementia #UseYourHead – that’s one of the current campaigns of dementia research charity BRACE.

Yesterday (5th April 2016) I set off, using de-feet – well, my feet actually – to do my bit for the campaign and to remember my dad, Bernard, who died on the 5th April 2015.

It’s a 12 mile or so circular walk from Postbridge to Fur Tor, on Dartmoor, where this picture was taken, using a route dad and I have taken many times.

Twelve miles of happy memories, sad memories, 12 miles of thinking about dad, and how much I always enjoyed just walking with him in our great outdoors.

Whether it was on Dartmoor, around the South West Coast Path, in Scotland, Wales, or just our local footpaths – de-feet were very much a part of what we enjoyed doing together.

For every £10 spent on dementia health and social care in the UK, just 8 pence is spent on research. This has to change. BRACE is campaigning to raise vital funds.

Our world class scientists here in the South West use their heads to defeat dementia – please use yours to support them.

Tweet a ‘headband-wearing selfie’ or ‘group/team pic’ to @AlzheimersBRACE using the hashtag #UseYourHead. Please share on Facebook, Instagram and other social media. Thank you!

To DONATE text CURE24 £3 to 70070 or visit the BRACE campaign page

Easter Memories

It was an Easter weekend many years ago – when I was aged around nine or ten – that I first went off on a camping and walking expedition with my dad on our own.

We wild camped on Dartmoor, near Princetown, in a two-person, single layer small green tent. I remember how excited I was to be staying out on the moor overnight. I remember how cold it was, temperatures below freezing overnight, a bucket of water left outside forming a layer of ice on the top.

I remember lying in my sleeping bag the next morning, playing noughts and crosses with dad in the dew on the side of the tent.

I remember being tired, walking 25 miles or so in two days – and dad’s advice to put my foot where his had been, literally following his footsteps, and that way we’d keep pace together.

I remember the adventure of it all like it was yesterday, that Easter weekend of 40 plus years ago.

As I remember, like it was yesterday, Easter last year – visiting dad in his care home on the Saturday, giving him an Easter egg and a banana, waving goodbye, not realizing it would be the last time I’d ever see him, not knowing that he would die from a heart attack less than 24 hours later.

I can’t believe that was 12 months ago, that dad has been gone all this time, as life goes on, moves on.

I’ll miss you tomorrow dad, as I do every day. Though you may be gone I still have my memories…so many happy memories.

Supporting BRACE dementia research – so we can all keep remembering.

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One of our last walk’s together – Tipton Following Footsteps Memory Walk September 2014 – with my nephew Huw and my brother Jules.

 

Defying Dementia

Dear Dementia,

It’s World Alzheimer’s Day 2015. I’m writing to tell you how I feel about your impact on my life.

When you arrived again at my door four years ago I was devastated and terrified.

There you stood, cocky, full of your own self-importance, as usual, refusing to leave empty-handed. You’d come, not for me – though you may one day – but for my dad.

How cruel of you. How greedy. You’d already taken both my dear grandmothers, my strong, independent mother-in-law, and a kind, intelligent friend, who in his 80s still had an amazing zest for life. You snatched another friend with your iron grip, when he was in his 50s, a young working father. And there are so many others I know of too.

You crushed them all, stole everything.

So yes I wept when I knew you’d come for my dad. I cried. Dad cried. My mum cried.

I hope it makes you happy our grief. Because there’ve been bucket loads of it, since you picked on us again.

The tears and the torment came in stages.

First was how dad slowly lost touch with his previous full and active life – his confusion over places and people he knew well, his loss of ability, tools unused no longer recognised, his struggle to do even a child’s simple jigsaw, or put on his own seat belt.

Then he was no longer able to interact, have a conversation, be part of his family’s day to day joys and woes. How could he relate to our lives, when he could no longer understand what was happening in his own?

He began wandering distracted, eyes wide-eyed and vacant, at all times of the day and night. He could no longer feed, wash, or dress himself. The every day mundane parts of being human eluded him – sleep, controlling bladder and bowel, spatial awareness, and that precious gift, learned young as a child, speech.

A great talker throughout his life, dad said less and less and then almost nothing. One night I found myself weeping in front of him as he sat there word-less. It was when his own tears began to fall, I realised I had to adjust and accept this loss. To, as the words of Desiderata advise: “Go placidly amid the noise and haste and remember what peace there may be in silence.”

We did adjust mum and I to this new changed dad.

But – oh dementia, you are so cruel – you drained more and more from him, until only 24/7 specialist carers could nurse the wisp of himself he’d become.

Driving him to this new home was the hardest thing I’ve ever done and the worst day of my life.

I felt the deep despair I’d had since a child, when I saw my grandmother die in a nursing home. I felt lost, without hope. I felt that you dementia had won again.

But dad wasn’t giving up without a fight. He wasn’t ready for you to take all of him. There were moments of humour, things he still enjoyed like a walk in the garden, the kindness and care of the staff, moments of tenderness and moments of precious memory: “Land’s End,” he said to one day pointing at a photograph of the famous landmark. They were the only words he spoke that visit – but music to my ears.

Even in the last hours before his death, he defied you dementia – experiencing all his senses.

He ate chocolate, he ate a banana – clearly savouring the taste, smell, textures and the moment of sweetness. He saw his family, looking through a photo album with me silent, but aware. He felt the touch and bond with another human, in a spontaneous hug with one of the staff.

And he spoke too, albeit briefly – but showing his mind was still capable of thinking of adventure: “Where are you off to dad?” I asked as he got up to wander. “Down the town!” he replied. “OK. See you later then,” I said.

It was the last exchange of words between us. He died less than 24 hours later of a heart attack.

So you see dementia, you may have broken his heart – but you never broke his spirit.

And you never stopped him being loved.

One final thing to say before I go. Dad’s death did quell my spirit for a time. It stole my resolve to fight you, defy you – I stopped campaigning, I stopped writing.

I know I can do nothing to stop your cruel invasion of people’s lives. In the time I’ve written this, who knows how many terrible calling cards you’ve left.

But I see so much around me that is good – intelligent, brave, determined people fighting dementia, challenging the grip you have. It gives me hope. It gives me optimism.

Oh yes I still wonder if you might come and find me one day, but I no longer carry the fear of you I learnt as a child.

With my words dementia I defy you and whilst I can, I always will.

THANK YOU AND GOOD NIGHT!

At the BRACE agm with fellow marathon runners Simon and Paul

At the BRACE agm with fellow marathon runners Simon and Paul

I’ve made my 50 marathons at age 50. I’ve crossed that finish line. I’ve had that party.

Very exceptionally delighted to say that the whole challenge has, to date, raised in excess of £6,300 for BRACE dementia research. My original 10 marathons raised more than £6,000 for a number of different charities including Hospicecare, Motor Neurone Disease, Cystic Fibrosis and the British Heart Foundation.

If you include previous challenges – walking 460 miles around the Devon border, 630 miles along the South West Coast Path, parachuting out of a light aircraft, cycling the odd 100 miles or so, and the nine miles I walked in aid of Help the Aged when I was eight, it adds up to in excess of £40,000 in fundraising.

IMG_0257It’s a staggering amount of money.

A staggering amount of money that has been contributed and added to by so very many of my family and friends, along with kind, generous neighbours from the wonderful community in which I live, and kind, generous strangers I’ve met en route during these challenges.

 

I couldn’t have come this far, or achieved any of this without that continuing support.

THANK YOU EVERYONE SO VERY VERY MUCH!!!

I’m not going to hang up my trainers or stop writing, but I think we all deserve a rest now for a bit – don’t you.

It’s been an amazing journey and one that isn’t over yet.

So this isn’t a goodbye, simply TTFN x

PS: Watch this space!

 

 

Fantastic Fifty – or Crazy Woman

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Wow! What a weekend.

Reaching 50 marathons three days after my 50th birthday – I’m still on a high.

It’s been an incredible journey of ups and downs – but seeing that finish line at Edinburgh on Sunday was just the most adrenaline-fuelled moment of my life.

I remember rounding the corner at the 26 mile point, hearing the crowd cheering, the course lined with spectators, and realising there was just 0.2 of a mile between me and my dream.

I launched into a spontaneous victory sprint, crying out something like: “50 marathons, I’ve done it!” I literally leapt across the finish line, punching the air. It was simply A FANTASTIC 50!

Emotion got the better of me just after, as I sat and remembered my dad – his own challenging journey during the last three years reflecting mine.

Whilst, I’d persevered in ticking off around one marathon a month, 40 since April 2012, dad had struggled with advancing vascular dementia. I was adding to my mileage and my medals. Dad was losing his ability to speak, eat, sleep and recognise me – let alone, my achievements.

His finish line came 8 weeks before, when his heart gave out before his mind did. He’s been firmly in both of mine ever since.

He was definitely with me in spirit on Sunday. When my legs hurt and a howling headwind was hampering progress, his mantra he used when I was a child and we ran together, still rang in my ears: “It’s only pain, it won’t kill you.”

He’s been right you know. So right. Running can be painful. Hugely at times. But I’ve come through those barriers. Seen off my demons. Running has contributed to making me who I am – a stronger person, less afraid of challenge, determined to take on life and live it to the full.

20150531_093226Meeting my marvellous support team of family and friends shortly after the finish, by the local radio stand and hearing Coldplay Viva La Vida over the loudspeaker, I started dancing and couldn’t stop. It was a wild, carefree jam-jar moment.

I asked John, my husband, later: “Did I look a bit crazy when I was dancing to Coldplay?”

“Yes,” he said. “You did.”

“And what about when I jumped over the finish line.”

“Yeah, you looked crazy then as well”.

“Do you mind being married to a crazy woman?” I asked.

“Not a bit,” he replied with a smile.

Many people told me I was crazy to take on this challenge. It seemed total madness to me as well at times.

This journey has taught me – never let your own fear or other people’s doubts stop you from following your dream.

It may be crazy – but it could be fantastic too.

edinburgh girls finishThanks to so many people for helping me realise my dream – especially my stalwart husband John, my always-positive mum Rosemary and all my family and friends.

To all my running pals, who are so inspiring too, those I run with and those I know online, especially the girls who came with me to Edinburgh – Claire Ashby, Becky Robson, Jane Hemsworth and Helen Palmer, all from Sidmouth Running Club, who did the marathon and Amanda Perry and Julie Payne, who did the half.

Also to other people who’ve supported me, especially from our village community – who with family and friends, have collectively helped to boost my fundraising to nearly £5,000.

Thanks to everyone at BRACE, particularly chief executive Mark Poarch, for their support and for doing terrific work in funding much-needed research into dementia.

20150217_152310And finally of course remembering and dedicating this post to my own inspiration, my dear dad Bernard.

http://www.justgiving.com/Jo-EarlamBRACE

PS: Oh, just realised I forgot to say – I got a second best ever time of 4:14. I was about halfway overall, in the top third of all the women and in the top 20% of my age group. Not too bad for a fun runner!